US BetterLife participants please log into BetterLife at us.betterlifefshd.org.
The FSHD Society is the world’s largest advocacy and research organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy.
Empowering change through research, support, and relentless advocacy for FSHD families.
Advancing hope through groundbreaking FSHD research and innovative clinical trials worldwide.
Take control of your FSHD journey and help develop potential treatments faster.
Ask the FSHD Navigators and get connected with a real person. We are here to journey alongside you and give you the resources you need to live your best life with FSHD.
Just email us at Navigator@FSHDsociety.org, call (781) 301-6060, or submit a question.
January 12, 2026, Originally posted to Business Wire Highlights: Apitegromab Biologics License Application (BLA) resubmission and U.S. launch, following FDA approval, are anticipated in 2026 for the treatment of children […]
Connecting our community through the latest FSHD information on research, newsmakers, and breakthroughs.
Accelerating scientific discoveries and clinical advancements to develop treatments and a cure for FSHD.
Join us for engaging events that foster community, raise awareness, and support FSHD families and initiatives.
Accelerating research, providing support, envisioning a world without FSHD.
Our network supports the FSHD community with compassion and collaboration.
The Society has bold goals and we are making significant progress.
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